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At 6:45 this morning, I find myself sitting in a chair recovering from the second major nerve pain episode of the week.
When I say pain, I struggle to find the right word.
Acute doesn’t seem strong enough.
Severe doesn’t seem strong enough.
Excruciating gets closer.
The pain was so intense that it made me cry out loud.
This time, we didn’t mess around. We went straight to the nuclear option: opioids.
Thankfully, they worked.
Within a relatively short time, the pain began to retreat. Not disappear entirely, but retreat enough that I could breathe, think and function again. Later this morning I will speak to my doctor about the next steps. My hope is still to avoid long-term opioid use and transition to something safer as the Gabapentin has time to build up in my system.
But that isn’t actually what I want to write about.
As I sat here recovering, I found myself thinking about other people with PSP.
Not the people who can still explain what they are feeling.
The people who can’t.
I am fortunate.
When the pain hit, I could tell my wife exactly what was happening. I could explain where it hurt. I could tell her what helped and what didn’t. I could ask for medication. I could ask for the massage gun. I could ask for ice packs. I could describe the intensity. I could advocate for myself.
What about the person who cannot?
What about the person whose speech has deteriorated?
What about the person whose communication has become limited to a few words?
What about the person who can no longer explain that the pain is burning, stabbing, shooting or unbearable?
What about the person who simply appears agitated, distressed or restless?
How many times might severe pain be mistaken for confusion, anxiety, frustration or difficult behaviour?
I genuinely do not know.
But after experiencing this week, I cannot stop thinking about it.
One of the cruellest aspects of neurological diseases is that they do not just take away physical abilities. They can also take away the ability to describe what is happening inside your own body.
Pain is difficult enough when you can explain it.
Imagine experiencing it when you cannot.
Imagine knowing something is terribly wrong but being unable to communicate it clearly to the people trying to help you.
That thought breaks my heart.
So if there is one message I would like caregivers to take from this post, it is this:
Never assume that a person who struggles to communicate is comfortable simply because they are quiet.
Never assume that distress has no physical cause.
And never underestimate nerve pain.
If what I experienced this week is nerve pain related to PSP in any way, shape or form, then “unpleasant” does not begin to describe it. It was overwhelming, frightening and all-consuming.
I was lucky.
I had a voice.
I had someone who could understand me and who listened.
I had someone who knew something was wrong and could respond.
Not everybody does.
And this morning, more than the pain itself, that is what I cannot stop thinking about.
